Thursday, October 19, 2017

My Child Has a Diagnosis. Where Do I Start?

My Child Has a Diagnosis. Where Do I Start?

Finding out that your child has a disability or special health-care needs can change your world in a moment. You might be feeling like someone just sucked the wind from your sails. You might be filled with anger and grief. Or you might feel a little relieved to finally have a diagnosis. Maybe you were in denial about your child’s diagnosis and are just now ready to move forward. All of these emotions – and more – are perfectly okay. Give yourself permission to feel your feelings without judgment. Begin where you are, take a deep breath, and come back to this page as much as you want and need – on your timeline. 

Early Intervention for Birth to 3 Years of Age

Your child’s special health-care needs or disability might affect how and when they reach developmental milestones. Early intervention gives children a big boost to help them grow. If your child is an infant or toddler, it is very important to ask for early intervention services. You can learn more about this on the Early Childhood Intervention (ECI) page. Do not delay; ask for your child to be evaluated for these services.

Help for the Newly Diagnosed Child (All Ages)

Other Important Things to Know

  • Financial concerns: You might wonder how to plan for the costs of medical care for your child. Learn more about family financial planning and steps in the process on our Financial Concerns page.
  • Medical planning for your child: Your child might begin seeing several specialists and therapists. Having a plan in place will help everyone involved in your child’s medical care understand the bigger picture and how you want your child treated by the medical community. Learn more about medical planning on the Medical Home page.
  • Technology, devices and other tools that can help: Your child may benefit from having special equipment, technology devices, or durable medical equipment and supplies. Learn more about adaptive and assistive devices and technology.
  • This page has a lot of information for you to think about. You may want to move forward a little bit at a time, and that’s okay. The website will be waiting for you when you are ready to read more.

Questions to Ask Yourself – and Your Child – When Creating a Vision for the Future

  • Where do you see your child in 10 years?
  • What life milestones do you hope your child has reached in 5 years? 15 years? 25 years?
  • Picture the best day for your child. What does it look like? What can you do so you have more of those days?
  • Picture the worst day for your child. What does it look like? What can you do to help your child and your family get through it?

Top Five Things You Can Begin to Do Now That Will Help You and Your Family

  1. Create a vision and plan – one for your child and one for your whole family.
  2. Understand your child’s diagnosis. Do the research to learn more about it and the terminology that goes with it. Don’t be afraid to ask questions. The more informed you are, the more empowered you will be to help your child and your family. Learn more about how to talk to your child’s doctor.
  3. Create a care notebook to keep your child’s medical records organized and in one place. Take it with you to all doctor and therapist visits. Learn more about organizing your medical records.
  4. Reach out to other parents. Remember that you are not alone and that other parents have experienced this too. Join a support group or online forum with parents of children with the same or similar diagnoses. Learn more about how to connect with other parents.
  5. Take care of yourself and your family. Your child is not defined by a diagnosis. It is just a part of who they are, like the color of their hair or eyes. Nurture yourself and your relationships. This will go a long way in helping all of you cope and thrive. Learn more about self-care.

Texas Medicaid Waiver Programs for Children with Disabilities


Texas Medicaid waivers are a gateway to getting services for your child. We don’t want to tell you what to do, but we strongly suggest that you consider adding your child to the waiver interest list(s), which many parents call “waiting lists,” if you haven’t already done so. Even if you hope your child will never need those services, it is very important that they be added to the interest list for any program(s) that might meet their needs. You can always decline the services once your child moves to the top of the list.

Medicaid Waiver Programs for Children with Disabilities

Many parents say they wish they had signed up for the waiver interest lists when their child was born or first diagnosed with a disability or special health-care needs. Some of the interest lists have more than a 10-year wait time for services.
We know this page has a lot of information for you to take in. It’s okay if you don’t absorb everything here in 1 visit. Take a deep breath and come back as much as you want or need to.

What Are Waivers and How Do They Work?

  • Waivers let states use Medicaid funds for long-term home and community-based services for people with disabilities or special health-care needs and the elderly in order to help them live in the community.
  • Before the creation of waiver programs, people had to live in hospitals, nursing homes, or other institutions such as Intermediate Care Facilities for Individuals with an Intellectual Disability or Related Conditions (ICF/IID), so that Medicaid would pay for long-term services.
They are named “waivers” because certain Medicaid requirements are waived (meaning they don’t apply). For example, family income. All but 1 waiver is based on just the child’s income and certain licensing requirements for service providers. Your child’s income means any money that they personally have in assets, earn, or are paid – not your whole family’s income.
  • Besides getting these additional services, people who receive waiver long-term services and supports also get full Medicaid health-care benefits. This is a huge help for children who have complicated medical needs and no other health insurance.
  • Texas has 7 waivers, and each one has its own interest list. Consider adding your child to all the interest lists based on their identified diagnosis and current needs. You don’t know what future needs your child might have, so you might want to place them on as many of the lists as possible. One of the Medicaid waivers, known as the Youth Empowerment Services (YES) program, will eventually be statewide but is currently only available in several counties, including Bexar, Tarrant, Harris, and Travis.
  • Waivers are managed by the Department of State Health Services (DSHS), the Health and Human Services Commission (HHSC), or the Texas Department of Aging and Disability Services (DADS).
  • When there is room for your child on one of the waiver programs, they will come off of the interest list. This is when DSHS, HHSC, or DADS (as applicable) will review diagnostic and other information to decide if your child meets the waiver requirements. Depending on the waiver, you might be asked for information about their medical, psychological, and developmental history, as well as financial and income eligibility. The eligibility information that is needed changes based on the waiver. The comparison of Texas Medicaid waiver programs chart gives you more details about what is needed for each of the waivers.

How to Add Your Child to Interest Lists

You do not have to prove your child is eligible before adding them to the waiver interest lists. Your child will go through this process and review once they move to the top of the list. Only then is the eligibility information reviewed and used to decide if your child can enroll.
  • Call 1-855-937-2372 for information about DADS long-term services. A trained professional will guide you to the right option, including the waivers, if appropriate.
  • Call your Local Mental Health Authority about the Youth Empowerment Services (YES) waiver program. Go to the DSHS website to find the Local Mental Health Authority in your area.

The Texas Medicaid Waivers

All of the waivers are listed below with a description and link leading to more information about each one:

Important Tips About Interest (Waiting) Lists

  • Consider adding your child to as many waiver interest lists as possible when your child is first diagnosed with a disability or special health-care needs. You should also think about adding your child to the lists even if they aren’t diagnosed but have reason to believe that you child will have a long-term disability or special health-care needs.
  • Ask for an email confirmation or a mailed letter when you add your child to the Medicaid waiver interest lists. Keep this in a safe place.
  • It is very important to keep your address and contact phone numbers updated because if your child moves to the top of the interest list and they can’t reach you, your child will be dropped from the list.
  • At least 1 time a year, call to update your contact information so they know how to reach you. Most parents remember by calling around their child’s birthday. During these calls, you can also find out where your child is on the list. Write it down in a safe place, like your care notebook, so you can keep track of how far your child moves up the list each year. See our Organizing Medical Records page for more information about care notebooks.
  • Once your child moves to the top of an interest list, a service coordinator, case manager, or nurse will schedule a home visit. This will start the process of determining if your child is able to enroll in one of the waiver programs. You can also research the waiver program beforehand to learn what it takes for your child to get its services.
  • Your child can remain on other waiver interest lists while receiving waiver services. They just can’t receive services from more than 1 waiver program at the same time. For example, if your child is receiving MDCP services, and they move to the top of the CLASS interest list and are approved for CLASS services, you will have to pick between the 2 programs. In this example, it might be better to give up MDCP and enroll your child in the CLASS program, since your child will age out of MDCP at 21 years old, and CLASS has no age limit. You can also connect with other parents whose children receive waiver services to help you decide which one is best for your child.
  • If you have other health insurance through an employer, and your child is enrolled in a waiver program, you might be reimbursed for health insurance premiums through the Health Insurance Premium Payment (HIPP) program. Once your child starts receiving waiver services, call your local utility company about possible discounts on electricity, water, and wastewater bills if your child lives in your home. Depending on income, your family might also be able to receive food stamps (SNAP benefits).
  • Most of the waivers offer the Consumer Directed Services (CDS) choice for at least some, if not all, of the program’s services. Also known as “self-directed services,” this gives you more personal control over how your child’s services are delivered, and many parents prefer it. For example, parents who pick the CDS choice serve as the employer for their child’s attendants. They are able to interview, hire/fire, and train them.
  • If your child has an intellectual disability or a condition related to an ID in addition to high medical needs, call 1-855-937-2372 to ask about diversion slots. These slots are for extreme cases only, such as a critical health crisis that puts the family at risk of placing the child in a state supported living center. If approved, your child moves to the top of the HCS interest list.

Organizing Medical Records: Creating a Care Notebook

Organizing Medical Records: Creating a Care Notebook

Do you struggle to locate medical information for your child’s doctors and therapists? Or find yourself answering the same questions again and again from caregivers or teachers? Your child might see many doctors, therapists, and other professionals over the years.
It helps to keep medical records and other important things about your child’s care in one place. We’ve heard that many parents find a care notebook to be the best way of keeping everything organized. Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and members of their school or care team would need to know about your child. It’s simple and easy to carry to doctors’ offices, day care or school, and other places you go with your child. It can even be kept on a tablet or phone.
Ready to get started? Well, read on!

What Is a Care Notebook?

A care notebook is a place to keep:
  • Medical records.
  • Medication changes.
  • Treatment plans.
  • Other key information for caregivers, doctors, therapists, and others who work with your child.
Many people also use a care notebook to organize things like:
  • Important phone numbers.
  • Notes from doctor’s visits.
  • Hospital stays.
  • Medication schedules.
  • School strategies and contacts.
  • Transition plans.
  • Developmental checklists.
  • And more!
Having a care notebook is a good idea regardless of your child’s age. Even if your child is a teenager, keeping a care notebook will help you and the care team as your child grows and has new or different needs. A care notebook is a very helpful tool for anyone. Don’t forget that a care notebook will probably contain very sensitive information that needs protecting, such as Social Security numbers or Medicaid ID numbers.

Why Should You Create a Care Notebook?

  • A care notebook will help you keep everything important organized and easy to find. When you’re away (or short on time), the care notebook will give caregivers the information needed to best take care of your child.
  • If your child has an emergency, the notebook can help first responders know important medical information, such as whether they have a feeding tube, communication device, or other equipment.

How Do You Get Started?

  • Make a list of the things you refer to most about your child, such as reports from their doctors, lab results, vaccine records, care plans, hospital stays, school records, etc. Remember to include information most often needed by doctors, caregivers or respite providers, school staff, and others on your child’s care team.
  • Decide how you want to organize it. Some parents use a 3-ring binder, while others prefer a virtual care notebook on their laptop, tablet, or smartphone. Do what works best for you and your family. Keep in mind that, due to concerns about computer viruses or security and privacy issues, you can share your care notebook as a hard copy instead of an electronic one.
  • There are many free online tools that allow you to download or print templates for your child’s care notebook. See some of them at the links below.

Being Prepared for an Emergency

Friday, March 31, 2017

Handy List of Words for Social Workers

The word Health surrounded by a collage of words related to heal

As a social worker, you are required to keep case notes. It’s important to maintain detailed records through case documentation. It allows you to create successful outcomes for your clients. Always make sure your case notes are useful. Do your best to make sure they provide insight and value. Analyze your notes and see if they would be useful to another case worker. You want to make sure you give an accurate picture of the client’s history, as well as their current situation.

It’s important to use language that is non-judgmental. Neutral language is the most common form of case notes in social work. It’s also helpful if you avoid making assumptions and remember to stick to the concrete facts. You should always indicate clearly when a comment is an observation. It is imperative you make it clear when you are recording the client’s own words by using quotation marks.
Notes are important in this type of work because the courts can subpoena records and other reports; you have to be careful about what you say about your respective client. Write your case notes immediately after you have spoken with a client. Here’s a handy list of words that many social workers use while writing up their case notes:
  • Acknowledged
    Actively Listened
    Checked In
    Crisis Intervention
    Goal (setting)
    Development/Goal Setting
    Information Giving/Gathering
    Physical Activity
    Problem Solving
    Reflective Listening
    Social Skills Practice

Monday, February 13, 2017

Is Love Enough To Make A Marriage Succeed?

Is Love Enough To Make A Marriage Succeed?

By Dr. James Dobson

Is Love Enough To Make A Marriage Succeed?

Love can be defined in myriad ways, but in marriage “I love you” really means “I promise to be there for you all of my days.” It is a promise that says, “I’ll be there when you lose your job, your health, your parents, your looks, your confidence, your friends.” It’s a promise that tells your partner, “I’ll build you up; I’ll overlook your weaknesses; I’ll forgive your mistakes; I’ll put your needs above my own; I’ll stick by you even when the going gets tough.”

This kind of assurance will hold you steady through all of life’s ups and downs, through all the “better or worse” conditions.

Many couples assume that the excitement of their courtship will continue for the rest of their lives. That virtually never occurs! It is naive to expect two unique individuals to mesh together and to remain exhilarated throughout life.

Gears have rough edges that must be honed before they will work in concert. That honing process usually occurs in the first year or two of marriage. The foundation for all that is to follow is laid in those critical months. What often occurs at this time is a dramatic struggle for power in the relationship. Who will lead? Who will follow? Who will determine how the money is spent? Who will get his or her way in times of disagreement? Everything is up for grabs in the beginning, and the way these early decisions are made will set the stage for the future. If both partners come into the relationship prepared for battle, the foundation will begin to crumble.

The apostle Paul gave us the divine perspective on human relationships--not only in marriage, but in every dimension of life. He wrote, "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves" (Philippians 2:3).

That one verse contains more wisdom than most marriage manuals combined. If heeded, it could virtually eliminate divorce from the catalog of human experience—no small achievement, considering that more than one million marriages break apart in the United States every year. If you want yours to be different, I urge you to commit now to “sticking in there” during the newlywed phase, the middle years, and your golden age together.

Will your commitment hold you steady? If you want your marriage to last a lifetime, you must set your jaw and clench your fists. Make up your mind that nothing short of death will ever be permitted to come between the two of you. Nothing!

Premarital counseling is a must and can literally be a marriage saver. These sessions can help young men and women overcome the cultural tendency to marry virtual strangers. Let me explain.

The typical couple spends much time talking. Still, they don't know each other as well as they think they do. That is because a dating relationship is designed to conceal information, not reveal it. Each partner puts his or her best foot forward, hiding embarrassing facts, habits, flaws, and temperaments.

Consequently, the bride and groom often enter into marriage with an array of private assumptions. Then major conflict occurs a few weeks later when they discover they have radically different views on nonnegotiable issues. The stage is then set for arguments and hurt feelings that were never anticipated during the courtship period.

That's why I strongly believe in the value of solid, biblical premarital counseling. Each engaged couple, even those who seem perfectly suited for one another, should participate in at least six to ten meetings with someone who is trained to help them prepare for marriage. The primary purpose of these encounters is to identify the assumptions each partner holds and to work through the areas of potential conflict.

The following questions are typical of the issues that a competent counselor will help the couple address together:

• Where will you live after getting married?
• Are children planned? How many? How soon?
• Will the wife return to work after babies arrive? How quickly?
• How will the kids be disciplined?
• Are there theological differences to be reckoned with?
• Where will you spend Thanksgiving and Christmas holidays?
• How will financial decisions be made?

This is only a partial list of questions to be discussed and considered. Then a battery of compatibility tests is administered to identify patterns of temperament and personality. Some couples decide to postpone or call off the wedding after discovering areas of likely conflict down the road. Others work through their differences and proceed toward marriage with increased confidence. In either case, men and women benefit from knowing each other better.

Someone has said: The key to healthy marriage is to keep your eyes wide open before you wed and half-closed thereafter. I agree. Premarital counseling is designed to help couples accomplish that.

From Dr. Dobson’s book, The Complete Marriage and Family Home Reference Guide